Nottingham: Moran and Multiple Choices – 27.01.16

I’ve never seen a different gastroenterologist in a different hospital before. I was full of anxiety and fear of being unable to explain my history to him or to even get him to help me. I was over thinking everything I wanted to say and everything I could possibly say; this one sided conversation with my thoughts and my fears. I’ve had a bad week leading up to my appointment, including traveling to the hospital which isn’t local and is in a new city I’m not used to. As much as I can prepare myself – and I realise that I do this ALOT more than I would like to admit and it’s on a very unconscious level over the past 5 years – I can’t actually prepare myself; I just need to go and find out more. And that is scary.

In reality it wasn’t as awful as I had prepared myself for. It was still as nerve-racking as I’d anticipated but he was lovely. He is a clinic professor and a lead specialist in IBD research. A step up from my consultant at my own hospital but very much down to earth and able to talk me through everything. He took my history, asked lots of follow up questions to my treatment plans, padded out what he already knew from my consultant’s referral letter – something quite lengthy, attached to the front of my new hospital patient folder – and then moved onto my last year’s worth of treatment.

For those who have followed me for a while will know that this time last year I was feel well and in the space of a couple days it all changed. I started feeling unwell on the Infliximab and had some tests run – blood work to check my drug and antibody levels – which came back bad. I wasn’t getting anything out of the drug so I had Methotrexate added in to the mix for almost 6 months before I was given funding for Vedolizumab; my current medication. This referral for Nottingham has been in the works since I started Vedo back in October 2015 so I knew by the time I came to see this new doctor I would be in need of something new.

He didn’t disagree with my treatment plans at all but realistically this drug would fail and I needed something else. He also didn’t disagree with my surgical option either, saying it is good to know what is possible if medications are all exhausted. But until then, he could over me two options:

A clinical trial for a new drug, entering into Phase III this year had had great success in its Phase II results. Not too many specifics here, fear of overloading my already overwhelmed mind.

A biological drug – Ustekinumab – which isn’t approved for use in Crohn’s Disease. This would need private funding from the drug company after being rejected by the NICE governing body.

Then surgery. If needed, a Panproctocolectomy or a Subtotal Colectomy depending on my colonoscopy results.

Ah, the colonoscopy. It was ‘booked’ at the beginning of January at my surgical consult and as of yet not had an appointment date for its pre-assessment or it’s actually occurrence. I’m getting frustrated. I need this scope. I need to know the status of my rectum and if it’s diseased so I can bloody well know the details of what lies ahead for me. Personally if there is disease; I’d have the surgery. No disease in there; the clinical trial. Obviously, taking on the advice of my current IBD team, the surgeon and the Nottingham team; we can decide the best route to go down. But I can’t get started on those options until I get my arse checked out.

My anxiety about this is hitting a new high. I fear having my next infusion – happening on Feb 1st – and then knowing I’m possibly without medication when / if the Vedo ends. (I’m almost 90% sure I won’t be making any success on Vedo after this fifth infusion; I’ll be at week 14/15 and they need to reassess its “effectiveness” – code for actual cost v possible benefits) The potential weeks of waiting for a colonoscopy, then results and then next appointments being booked, fills me with so much anxious energy. I fear getting sick in the interim and needing those bloody steroids again. I fear getting sick and needing to be admitted. I feat getting so sick I need an emergency surgery and having no clue or idea on what they do to me. I feat the mess that could happen. And yes, I realise this is all my own over-thinking but I can’t just sit back and wait for this to happen can I? I’ve got to take the bull by the horns and chase, chase, chase these appointments!!!

So despite my nerves, I am relieved that finally I have some positive steps I can take. Having a chronic illness like Crohn’s means always having to fight. Be in it private with yourself or out in the world to get your health organised and get what’s necessary to reclaim a good quality of life. And now that I’ve had time to mull this all over, consider my options and rediscover what I need to get done, I wouldn’t be so averse to going somewhere else for treatment.